A year ago today, autism became a part of our family. Of course, it's not like all of the sudden Luke had autism. We had been suspecting it for a few months. It just became official that day. August 23, 2010 was when it became real. It is hard to believe that a year has already passed. So much has happened.
A year ago, Luke was a vocal little boy but his speech was mostly unintelligible. He had a handful of word approximations like "bu" for bubbles and "da" for daddy. Because of his communication deficits, there were many tantrums and occasional meltdowns. There was growing frustration for everyone in the family. We didn't know how to handle it. Over the past year, his communication has greatly improved. He can use a few simple signs and he has so many word approximations that I have lost count! Even for those who are not around him often, if paying attention to the context of the situation when he is vocal, many can understand him! He has even put two words together-not often, but it is emerging! (My favorite is "chi chee" for chili cheese corn chips.) With an increase in his communication skills have come a decrease in his behavioral problems. Of course, he is a 3 year old so there are still tantrums on occasion but all-out meltdowns are few and far between. This is a huge praise!
A year ago, Luke was content in class or nursery at church but he didn't really interact with others. He preferred to stay to himself. Now, he is engaged in what is going on around him. He takes part in class activities. He is part of the group. Most of the time, he is a happy little guy. I have even seen him show empathy which kids with autism just don't do (or so I thought from all the reading I had done). He saw a little boy fall at the playground and start crying. Luke couldn't take his eyes off of him. He made a sad face and whimpered as he pointed to the boy. I reassured him that the little boy was ok. It was like he had to make sure of that. It was so sweet and so encouraging. He is so aware of what is going on! He even tries to initiate play with others on rare occasions. And now, he plays with his brother more at home and is often seen imitating him in play. This is so fun to watch!
A year ago, Luke really didn't make eye contact and he often wouldn't respond when his name was called. Now, not only does he make great eye contact, he smiles and greets people - even strangers. He waves and says "bye" when leaving church or school. He more consistently responds when someone calls his name. He has become my social butterfly of sorts. I love it!
A year ago, my life changed in a big way, not only mine but that of every member of my family. So many challenges. So many questions. "How do we do this?" ran through my head many times. Roger and I were scared and many times felt lonely. "Who understands what we are going through?" We know that God has been with us and that He understands. He has never left us, just as He promised in His Word. But something about having a diagnosis can bring on a sense of isolation. There were times it felt like no one understood what we were dealing with. Over the past year, God has opened so many doors. He has brought many amazing people into our lives. The early intervention occupational therapist and speech therapist were wonderful and Luke responded so well to them. The teachers and staff at Goodwill Easter Seals Child Development Center were terrific with him. They were exactly what he needed (and I did too)! They taught Luke and our family so much. Now, he is at a new school for kids on the autism spectrum. He has a fantastic teacher that he likes and to which he responds. I know we will all be learning a lot from them this year (weekly parent training sessions start this week!). Of course, I cannot forget the precious children and families we have met and befriended who are on the autism journey along side us. These are people we may have never known had autism not come into our lives. We understand each other. The struggles, the victories. We get it. Autism has bonded us in a special way. We are blessed because they are in our lives.
So, we are not celebrating this one year anniversay with cake or candles or balloons. Not that kind of anniversary. This year, we are celebrating with thankfulness. Thankful that God has been with us and has gone before us down this road. His grace truly is sufficient. Thankful that, along the way, we have seen the victories in seemingly small things (but the small things are big) among the challenges. Thankful that we are not alone and we know this. God is with us and so is a community of people who cheer and cry with us because they are going through it too. We are blessed to have a very supportive family who have been with us every step of the way. We have so many who lift us up in prayer as well and I certainly am thankful for them because if we need anything, it's prayer. Prayer for wisdom, direction, progress; Luke's teachers, his doctors; our patience,our strength; Nathan and understanding...the list goes on. God has been so gracious to us. Luke is a blessing and we are learning so much about him, about God, and about life because of this road we are on. I am thankful for that. It's progress for all of us. And I am thankful for hope. Thank you God for hope.
Tuesday, August 23, 2011
Friday, August 19, 2011
Taking a breath...and advice
The past couple of weeks have gone by like a whirlwind. They have been filled with fun, excitement, lots of activity, and lots of change. They have been both refreshing and exhausting. Now, it's Friday. I feel like I can take a breath. And thanks to the grandparents, who wanted the boys to come over for the night, I have time to write about it.
Last week, we were fortunate to take a family vacation to Orange Beach. I had been looking forward to it all summer as we were in need of a getaway to rest and recharge. We had a wonderful time. The weather was nice and the view from our 11th floor condo at Caribe was beautiful. Until this year, the sand and saltwater didn't really appeal to the boys. They would much rather play at the pool which was okay too. On this trip, they truly enjoyed the beach. They loved playing in the sand and splashing in the waves. It was great to see them have so much fun together. My in-laws came with us this year. It was such a blessing. Not only did Roger and I enjoy their company, but we were also fortunate enough to enjoy a night out because of their help with the little ones. A vacation with small children is so nice but not necessarily relaxing so it was especially nice to have that time with Roger. It was hard to come home...but, we did. Home from vacation on Friday, attempt at recovery from vacation over the weekend, then first day of school for Luke on Monday. Whew! What was I thinking?
So, Monday rolled around and Luke started his new preschool, The Little Tree. I am thrilled to report that he had a phenomenal first day! He was happy, friendly, and didn't even have a single tee-tee accident! No tears either - from him or me! (For those who know me well, this may come as a surprise - not that he didn't cry but that I didn't!). Nathan and I had a couple of days together and enjoyed them completely. Then, Wednesday rolled around. Nathan's first day of Kindergarten. I walked him to the door of his classroom. He smiled with the teacher so I could get a picture, then he went in and started his day. Okay, this was hard for me. But, I sucked it up - no tears - and went home, not quite sure what to do with myself. I wanted to hang out at the school for a while...maybe make copies or cut out shapes or something...for any teacher...just to be there...kinda check in from time to time. Pitiful! My little guy, who usually has a hard time separating from me, did great! I was the one having the hard time. I had just talked to him about being brave and having courage and that God was with him. Now, I was having to repeat those words to myself! I survived the day and was so anxious to pick him up. He was all smiles when he got in the car. I am thrilled to report that he had a great first day too! He had a shakey start on Thursday, with a few tears, but today, he bravely got out at the carpool line and went in without me! Yea!!! and boo-hoo!!! That was a big step for him today. I guess it was for me too. He is getting to be such a big boy! I was so proud of him and he was proud of himself too!
I can't help but smile as I think about Nathan as he carried on a pretend conversation on his play phone in the car to Luke ( as Luke was still at school). He was speaking quietly so I didn't let on that I was listening to him. He said "Lukey, is school okay? Don't worry. Be brave. God is with you." That brought a big smile to my face, and tears too. It was so sweet. He is listening. Maybe he is taking it to heart.
So, here I am at the end of this busy week, well, couple of weeks really. I am sitting, breathing, and trying to collect my thoughts. Life is happening so fast. I don't want to miss anything. So many memories have been made over these last two weeks. Big moments in my sons' lives. Am I ready for all of this? I don't know...I hope so...one day at a time. Maybe I too will take that advice and not worry but be brave. I know God is with me. I can rest on that without a doubt.
Last week, we were fortunate to take a family vacation to Orange Beach. I had been looking forward to it all summer as we were in need of a getaway to rest and recharge. We had a wonderful time. The weather was nice and the view from our 11th floor condo at Caribe was beautiful. Until this year, the sand and saltwater didn't really appeal to the boys. They would much rather play at the pool which was okay too. On this trip, they truly enjoyed the beach. They loved playing in the sand and splashing in the waves. It was great to see them have so much fun together. My in-laws came with us this year. It was such a blessing. Not only did Roger and I enjoy their company, but we were also fortunate enough to enjoy a night out because of their help with the little ones. A vacation with small children is so nice but not necessarily relaxing so it was especially nice to have that time with Roger. It was hard to come home...but, we did. Home from vacation on Friday, attempt at recovery from vacation over the weekend, then first day of school for Luke on Monday. Whew! What was I thinking?
So, Monday rolled around and Luke started his new preschool, The Little Tree. I am thrilled to report that he had a phenomenal first day! He was happy, friendly, and didn't even have a single tee-tee accident! No tears either - from him or me! (For those who know me well, this may come as a surprise - not that he didn't cry but that I didn't!). Nathan and I had a couple of days together and enjoyed them completely. Then, Wednesday rolled around. Nathan's first day of Kindergarten. I walked him to the door of his classroom. He smiled with the teacher so I could get a picture, then he went in and started his day. Okay, this was hard for me. But, I sucked it up - no tears - and went home, not quite sure what to do with myself. I wanted to hang out at the school for a while...maybe make copies or cut out shapes or something...for any teacher...just to be there...kinda check in from time to time. Pitiful! My little guy, who usually has a hard time separating from me, did great! I was the one having the hard time. I had just talked to him about being brave and having courage and that God was with him. Now, I was having to repeat those words to myself! I survived the day and was so anxious to pick him up. He was all smiles when he got in the car. I am thrilled to report that he had a great first day too! He had a shakey start on Thursday, with a few tears, but today, he bravely got out at the carpool line and went in without me! Yea!!! and boo-hoo!!! That was a big step for him today. I guess it was for me too. He is getting to be such a big boy! I was so proud of him and he was proud of himself too!
I can't help but smile as I think about Nathan as he carried on a pretend conversation on his play phone in the car to Luke ( as Luke was still at school). He was speaking quietly so I didn't let on that I was listening to him. He said "Lukey, is school okay? Don't worry. Be brave. God is with you." That brought a big smile to my face, and tears too. It was so sweet. He is listening. Maybe he is taking it to heart.
So, here I am at the end of this busy week, well, couple of weeks really. I am sitting, breathing, and trying to collect my thoughts. Life is happening so fast. I don't want to miss anything. So many memories have been made over these last two weeks. Big moments in my sons' lives. Am I ready for all of this? I don't know...I hope so...one day at a time. Maybe I too will take that advice and not worry but be brave. I know God is with me. I can rest on that without a doubt.
Wednesday, July 27, 2011
Until Later.....
This is an emotional week for me. Yes, I know, most weeks are emotional weeks for me. But this week happens to be Luke's last at the Goodwill Easter Seals Child Devolopment Center (GESCDC). I might as well bring the tissue with me on Friday because I am sure I will cry...sniff, sniff. It is so hard to say goodbye, especially to people who have been such a big part of my family's life.
It was in November of 2010 that I received a call for the director (Anne) that a spot had become available for Luke at this school. It couldn't have come at a better time. Roger and I were both at our wit's end trying to figure out this autism thing and how to help Luke. We didn't know how to handle the screaming and the meltdowns. It was stressful to say the least. We were so excited that he could be in a program that could help him. Not only did it help Luke, it helped our family as well.
He began the program on November 29, 2010. (He didn't cry at drop off, but I did!) This was a big step for him and for me. I didn't know what to expect. How would he do? Transitions can be very difficult for kids with autism. He completely surprised me and transitioned remarkably well. In fact, the first day, he went into his class with a smile and every day since then has been the same. He loves the people there. They are an integral part of his life. Under their instruction and care, Luke has made great progress. His communication skills have improved. He has many more word approximations in his vocabulary, he uses simple signs more consistently to indicate his needs, and he is engaged in what is going on around him. He can recognize his name and match numbers. He is even making progress with potty training! (Ms. April is awesome!) The list goes on and on...not to forget the wonderful friends we have made along the way. I credit his success to God and the amazing people He has used to teach Luke. (Thank you Ms. Maria, Ms Toni, Ms. April). They are all special to me.
Over these months, I have grown to love the people who work there. The director, teachers, and assistants have all been nothing less than wonderfulThey have been supportive, encouraging, and informative. There have been days when I just looked like I needed a hug and was met with open arms(Thanks Anne!). They are like family. Their work is priceless. Not only are they good at what they do, they are also invested in the children. They really care. (Thank you Ms. Mickie, Ms. Toni). They look at these children with disabilities and see them first as children, not disabilities. They face challenges every day they go to work but they press on and are dedicated to their work and their children. I respect them so much for what they do.
But even more importantly, they have been so good to my little guy Luke. He loves going there. He is greeted with smiles each morning and, on most mornings, he flashes those sweet dimples and smiles back. (Thanks Ms. Diane, Ms. Eleanor, Ms. Bobbi, Ms. Jodi, Ms. Christy!) It is such a comfort to know your child is in good hands. He has been in great hands.
As this chapter comes to an end and a new one will soon begin, I look back with gratitude and look forward with hope. Thankful for progress already made and expectant of the progress that is to come. I am so thankful for the GESCDC and I will be forever grateful for the care they have given Luke. I know that he will miss them. I will miss them too! So, I won't say good-bye. I will just say..."until later."
It was in November of 2010 that I received a call for the director (Anne) that a spot had become available for Luke at this school. It couldn't have come at a better time. Roger and I were both at our wit's end trying to figure out this autism thing and how to help Luke. We didn't know how to handle the screaming and the meltdowns. It was stressful to say the least. We were so excited that he could be in a program that could help him. Not only did it help Luke, it helped our family as well.
He began the program on November 29, 2010. (He didn't cry at drop off, but I did!) This was a big step for him and for me. I didn't know what to expect. How would he do? Transitions can be very difficult for kids with autism. He completely surprised me and transitioned remarkably well. In fact, the first day, he went into his class with a smile and every day since then has been the same. He loves the people there. They are an integral part of his life. Under their instruction and care, Luke has made great progress. His communication skills have improved. He has many more word approximations in his vocabulary, he uses simple signs more consistently to indicate his needs, and he is engaged in what is going on around him. He can recognize his name and match numbers. He is even making progress with potty training! (Ms. April is awesome!) The list goes on and on...not to forget the wonderful friends we have made along the way. I credit his success to God and the amazing people He has used to teach Luke. (Thank you Ms. Maria, Ms Toni, Ms. April). They are all special to me.
Over these months, I have grown to love the people who work there. The director, teachers, and assistants have all been nothing less than wonderfulThey have been supportive, encouraging, and informative. There have been days when I just looked like I needed a hug and was met with open arms(Thanks Anne!). They are like family. Their work is priceless. Not only are they good at what they do, they are also invested in the children. They really care. (Thank you Ms. Mickie, Ms. Toni). They look at these children with disabilities and see them first as children, not disabilities. They face challenges every day they go to work but they press on and are dedicated to their work and their children. I respect them so much for what they do.
But even more importantly, they have been so good to my little guy Luke. He loves going there. He is greeted with smiles each morning and, on most mornings, he flashes those sweet dimples and smiles back. (Thanks Ms. Diane, Ms. Eleanor, Ms. Bobbi, Ms. Jodi, Ms. Christy!) It is such a comfort to know your child is in good hands. He has been in great hands.
As this chapter comes to an end and a new one will soon begin, I look back with gratitude and look forward with hope. Thankful for progress already made and expectant of the progress that is to come. I am so thankful for the GESCDC and I will be forever grateful for the care they have given Luke. I know that he will miss them. I will miss them too! So, I won't say good-bye. I will just say..."until later."
Monday, July 11, 2011
Not a statistic
I never liked Statistics in college. It was a class I struggled with but managed to get through with a passing grade. It was probably my least favorite class. My kind of stats are "4 out of 5 dentists prefer (toothpaste)." I can understand that. If only it was that easy.
Roger and I have been to a few seminars and conferences about autism over the past year. They give lots of statistics at those too. Stats like "30-50 percent of children with autism are mentally retarded." I don't want to hear that. This one is no fun to hear either: "families that have a special needs child have an 80 percent divorce rate." It is a sad statistic but I understand how it can happen.
Over the past year, we have grieved over our son who will face many challenges ahead. Many tears have been shed. We have researched autism until almost crazy, wondering if we are doing enough to help Luke while trying to balance the needs of our 5 year old, Nathan. We are trying to figure out how to prevent Nathan from resenting Luke for the attention he receives because of autism. We go to doctors and school. We have had therapy in our home. And then there is just life. Since autism has become part of our vocabulary, we have been busy. I am not saying all this to whine. Almost every one I know is busy with something. But, our busy-ness has consumed us in many ways. All too often, our days have just been about survival. Just making it until the kids went to bed was the goal, then we could collapse and try to get rest before starting it all over again. Our conversations were more and more about the boys and less and less about us. Somewhere along the way, we lost our focus. We were heading in the same direction, wanting the same thing for our boys, but they were becoming the priority.
The last couple of weeks have been difficult but good. Kind of an "evaluation" of our marriage. There has been much giving and forgiving. Much grace has been shown to me by my sweet Roger. I have been humbled and in awe of how God works. What could have been a hard time for us has been what has driven us together. Our commitment to each other and our family is as strong as ever. We have devoted time for each other every night after the boys are in bed. I haven't had time to blog because I have been spending time with my husband! It has been wonderful! We have been praying together, reading together, talking to each other ( about things other than the boys), and remembering all over again how and why we fell in love 12 years ago. These are things we should have been doing all along the way but, again, we had become complacent. We took each other for granted. We have been distracted and have neglected us. It is scary how easily that can happen.
Now, we are commited to the priority of "us." By the grace of God, we will not be a statistic. Our boys are still a priority, without a doubt. But, one of the best things we can do for them is be strong in our faith and our commitment to each other so that we can be what we need to be for each other and, thus, be what we need to be for them. I am so thankful that God has blessed me with Roger and the boys. They are truly gifts from Him. We have certainly not done things perfectly here. I pray that God receives all the glory from the good that will come from the messes I have made. I know His Word to be true so I can lean on Romans 8:28 and know that He will!
Romans 8:28 : "For we know that all things work together for good to those who love god, to those who are called according to His purpose."
Roger and I have been to a few seminars and conferences about autism over the past year. They give lots of statistics at those too. Stats like "30-50 percent of children with autism are mentally retarded." I don't want to hear that. This one is no fun to hear either: "families that have a special needs child have an 80 percent divorce rate." It is a sad statistic but I understand how it can happen.
Over the past year, we have grieved over our son who will face many challenges ahead. Many tears have been shed. We have researched autism until almost crazy, wondering if we are doing enough to help Luke while trying to balance the needs of our 5 year old, Nathan. We are trying to figure out how to prevent Nathan from resenting Luke for the attention he receives because of autism. We go to doctors and school. We have had therapy in our home. And then there is just life. Since autism has become part of our vocabulary, we have been busy. I am not saying all this to whine. Almost every one I know is busy with something. But, our busy-ness has consumed us in many ways. All too often, our days have just been about survival. Just making it until the kids went to bed was the goal, then we could collapse and try to get rest before starting it all over again. Our conversations were more and more about the boys and less and less about us. Somewhere along the way, we lost our focus. We were heading in the same direction, wanting the same thing for our boys, but they were becoming the priority.
The last couple of weeks have been difficult but good. Kind of an "evaluation" of our marriage. There has been much giving and forgiving. Much grace has been shown to me by my sweet Roger. I have been humbled and in awe of how God works. What could have been a hard time for us has been what has driven us together. Our commitment to each other and our family is as strong as ever. We have devoted time for each other every night after the boys are in bed. I haven't had time to blog because I have been spending time with my husband! It has been wonderful! We have been praying together, reading together, talking to each other ( about things other than the boys), and remembering all over again how and why we fell in love 12 years ago. These are things we should have been doing all along the way but, again, we had become complacent. We took each other for granted. We have been distracted and have neglected us. It is scary how easily that can happen.
Now, we are commited to the priority of "us." By the grace of God, we will not be a statistic. Our boys are still a priority, without a doubt. But, one of the best things we can do for them is be strong in our faith and our commitment to each other so that we can be what we need to be for each other and, thus, be what we need to be for them. I am so thankful that God has blessed me with Roger and the boys. They are truly gifts from Him. We have certainly not done things perfectly here. I pray that God receives all the glory from the good that will come from the messes I have made. I know His Word to be true so I can lean on Romans 8:28 and know that He will!
Romans 8:28 : "For we know that all things work together for good to those who love god, to those who are called according to His purpose."
Friday, June 17, 2011
Bring on the noise
I will be the first to admit that I love quiet time. Who doesn't? My house is a noisy one and quiet is too often hard to find. So, when the opportunity for a little time of peace comes my way, I usually take it - for the sake of my sanity.
This week was especially nice. My parents, aka "the reinforcements", were in town. When they visit, the boys usually spend a night with them. This is so nice because it gives Roger and I an opportunity for a date night. It is such a blessing to have this opportunity. Well, on this visit, the boys spent two nights this week with Nana and Papa. I am not sure if it was because they wanted to spend some extra time with the boys or they could see "exhausted" written all over me. Maybe a combination of both. They asked for a second night and we didn't fight it. I mean, who would we be to deny grandparents the joy of spending quality time with their only grandkids?
So, do I sound horrible yet? You might say "How could someone get so excited about their kids being away?" I love my boys with all of my heart and miss them when we are apart but, it is because of those times apart - quiet times - that I can better manage the noise and all that comes with it. I was able to enjoy time with Roger, catch up on a few things and get a little extra (much needed) rest. I am not exaggerating when I say it was like a mini-vacation :-) I am so thankful for this respite. So many families don't have this kind of opportunity. I don't take it for granted.
So, this morning, when the boys came through the door, I was ready with a big smile and open arms. And open ears. For any of you who know Nathan, you know he is often shy around others but I promise you, the boy can talk...a lot. (I can't imagine who he gets that from.) He is quite the thinker and I am pretty sure I have heard every thought. I am thankful for that. I always want him to be able to talk to me. And then there is Luke. He still may be considered nonverbal but he can make some noise. We still have some issues with screaming but it is getting better. More and more word approximations are coming out of his sweet little mouth. He takes in everything that is going on around him and it is starting to come out in sounds that I can understand. On the way home from school, he was pointing out of the window and saying "chees" over and over as he looked at the trees. This evening, he took me by the hand over to the bookshelf and wanted me to sit on the floor with him and look at books. He pointed to a clock and said "ca"...a duck and said "cack" for quack...blocks and said "ba"...blue and said "boo"...bed and said "be"...cookie and said "cook". He pretended to shut the gate (by slapping his hand on it) in a picture in one of his favorite farm books. To top it off, he led me to the snack cabinet and said "pop" which, in this case meant popcorn (it means popsicle when he goes to the fridge). He wanted popcorn and asked for it by name! This is huge! It may not sound like much but it is music to my ears! His communication is getting better with every passing week.
The world of autism can be a quiet one for many, and a lonely one. So many kids are nonverbal and never speak at all. For me to get to hear these "words" is such a blessing. I am blessed to have this noise fill my home. Of course, there are days when I am frazzled and cannot hear myself think. But, there are days of laughter and squeals of joy and new words. So, when the peaceful times present themselves to me, I snatch them up and simply enjoy them while they are there. But when it gets a little noisy, I have to remember that with the noise, comes learning and language and opportunity, and that is a great thing. I may love the quiet, but I really love progress! And I love these boys! I thank God for them for they are truly gifts from Him.
This week was especially nice. My parents, aka "the reinforcements", were in town. When they visit, the boys usually spend a night with them. This is so nice because it gives Roger and I an opportunity for a date night. It is such a blessing to have this opportunity. Well, on this visit, the boys spent two nights this week with Nana and Papa. I am not sure if it was because they wanted to spend some extra time with the boys or they could see "exhausted" written all over me. Maybe a combination of both. They asked for a second night and we didn't fight it. I mean, who would we be to deny grandparents the joy of spending quality time with their only grandkids?
So, do I sound horrible yet? You might say "How could someone get so excited about their kids being away?" I love my boys with all of my heart and miss them when we are apart but, it is because of those times apart - quiet times - that I can better manage the noise and all that comes with it. I was able to enjoy time with Roger, catch up on a few things and get a little extra (much needed) rest. I am not exaggerating when I say it was like a mini-vacation :-) I am so thankful for this respite. So many families don't have this kind of opportunity. I don't take it for granted.
So, this morning, when the boys came through the door, I was ready with a big smile and open arms. And open ears. For any of you who know Nathan, you know he is often shy around others but I promise you, the boy can talk...a lot. (I can't imagine who he gets that from.) He is quite the thinker and I am pretty sure I have heard every thought. I am thankful for that. I always want him to be able to talk to me. And then there is Luke. He still may be considered nonverbal but he can make some noise. We still have some issues with screaming but it is getting better. More and more word approximations are coming out of his sweet little mouth. He takes in everything that is going on around him and it is starting to come out in sounds that I can understand. On the way home from school, he was pointing out of the window and saying "chees" over and over as he looked at the trees. This evening, he took me by the hand over to the bookshelf and wanted me to sit on the floor with him and look at books. He pointed to a clock and said "ca"...a duck and said "cack" for quack...blocks and said "ba"...blue and said "boo"...bed and said "be"...cookie and said "cook". He pretended to shut the gate (by slapping his hand on it) in a picture in one of his favorite farm books. To top it off, he led me to the snack cabinet and said "pop" which, in this case meant popcorn (it means popsicle when he goes to the fridge). He wanted popcorn and asked for it by name! This is huge! It may not sound like much but it is music to my ears! His communication is getting better with every passing week.
The world of autism can be a quiet one for many, and a lonely one. So many kids are nonverbal and never speak at all. For me to get to hear these "words" is such a blessing. I am blessed to have this noise fill my home. Of course, there are days when I am frazzled and cannot hear myself think. But, there are days of laughter and squeals of joy and new words. So, when the peaceful times present themselves to me, I snatch them up and simply enjoy them while they are there. But when it gets a little noisy, I have to remember that with the noise, comes learning and language and opportunity, and that is a great thing. I may love the quiet, but I really love progress! And I love these boys! I thank God for them for they are truly gifts from Him.
Wednesday, June 8, 2011
Do what I do
"I really like you Lukey. You are my best buddy I think. Just keep watching me and do what I do. You'll grow up to be a great little guy." Those words brought a big smile to my face this afternoon. Definitely worthy of a Facebook post. Even worthy of a blog post.
Nathan and Luke have played all day long (would love to say they got along all day too but that is another story). Lots of fun. Some fussing too. Everywhere Nathan went, Luke was close behind doing the same thing. He was his big brother's shadow. Up the ladder...down the slide into the pool...run across backyard...jump on mini tramp...slide into the dirt...run back across yard...jump into pool...repeat. You get the idea. It was predictable. It was fun to watch them finally play together (that is, after fussing about who would go first down the slide.)
Nathan took it upon himself to be Luke's teacher today, and, for the most part, Luke was a pretty good student. All afternoon, it was "Luke, walk on your tip toes...bounce the ball...follow me...jump like this...say choo-choo." Nathan gave frequent progress reports too. "Mommy, Luke bounced the ball just like me...Luke said choo-choo..." It was fun to listen in as Nathan gave Luke advice too. "Luke, it is important to exercise and you have to eat right if you want to be healthy. You know, like eating healthy chips.". (BTW, we DO eat fruits and veggies!)
What was simple, but great to see, was Luke imitating his brother. He was learning from him. He is learning and growing and living. (Thank you God for that!) He understands so much and it is good to see him respond to us. Even when discipline was required (for both of them!) when they were doing something unacceptable, I could tell when Luke knew when he was doing something he shouldn't. He is learning what he can do and what he is not supposed to do. He is very receptive and very teachable (and so completely lovable!). He gets excited when he learns something new. I love to see that! It is another piece of the puzzle that is being unlocked as we learn more and more about him. It is progress. I love progress!
(As a side note, I started to think about how we all have learned at some point by imitating someone or something. Caused me to consider who/what I have been imitating. What kind of example am I giving my boys to imitate? Can I say, like Paul, "imitate me as I imitate Christ"? Ouch. Convicting...)
Nathan and Luke have played all day long (would love to say they got along all day too but that is another story). Lots of fun. Some fussing too. Everywhere Nathan went, Luke was close behind doing the same thing. He was his big brother's shadow. Up the ladder...down the slide into the pool...run across backyard...jump on mini tramp...slide into the dirt...run back across yard...jump into pool...repeat. You get the idea. It was predictable. It was fun to watch them finally play together (that is, after fussing about who would go first down the slide.)
Nathan took it upon himself to be Luke's teacher today, and, for the most part, Luke was a pretty good student. All afternoon, it was "Luke, walk on your tip toes...bounce the ball...follow me...jump like this...say choo-choo." Nathan gave frequent progress reports too. "Mommy, Luke bounced the ball just like me...Luke said choo-choo..." It was fun to listen in as Nathan gave Luke advice too. "Luke, it is important to exercise and you have to eat right if you want to be healthy. You know, like eating healthy chips.". (BTW, we DO eat fruits and veggies!)
What was simple, but great to see, was Luke imitating his brother. He was learning from him. He is learning and growing and living. (Thank you God for that!) He understands so much and it is good to see him respond to us. Even when discipline was required (for both of them!) when they were doing something unacceptable, I could tell when Luke knew when he was doing something he shouldn't. He is learning what he can do and what he is not supposed to do. He is very receptive and very teachable (and so completely lovable!). He gets excited when he learns something new. I love to see that! It is another piece of the puzzle that is being unlocked as we learn more and more about him. It is progress. I love progress!
(As a side note, I started to think about how we all have learned at some point by imitating someone or something. Caused me to consider who/what I have been imitating. What kind of example am I giving my boys to imitate? Can I say, like Paul, "imitate me as I imitate Christ"? Ouch. Convicting...)
Friday, June 3, 2011
Imagine a Life with Autism by Dr. Caroline Gomez and State Senator Cam Ward
Imagine A Life With Autism
By Caroline Gomez, Ph.D, State Autism Coordinator and State Senator Cam Ward
This editorial appeared in the Huntsville Times, Birmingham News, Montgomery Advertiser, Mobile Press Register, and Tuscaloosa News during Autism Awareness Month. We hope it gave outsiders pause and a new lens with which to view autism.
Close your eyes and imagine for a moment that as a child you are woken in the morning after sleeping for only a few hours. Exhaustion. You get out of bed, but have no idea where you are going that day. Anxiety. Someone helps you get dressed, but the tag in the back of your shirt feels like a pin pricking your skin over and over. Discomfort. You sit at the table for breakfast, but can't eat because your feet don't touch the ground and you begin to feel dizzy. Confusion. You ride in the car without knowing where you are going. Distress. You sit in the grocery cart as told, but the fluorescent lights overhead cause your head to begin throbbing. Pain. Now imagine that all of this takes place and you have no way to tell anyone that your are experiencing exhaustion, anxiety, discomfort , confusion, distress, and now intense pain and this was only the first hour of your day. How would you "communicate" your desperate need to get out of that grocery store before your head explodes? It sounds like a nightmare for many of us but it is a living reality for many children.
Children with autism spectrum disorder (ASD) are often living with these and other all-consuming challenges as they simply navigate through the chaos of an hour or a day. They often can't communicate their desperate needs and this creates an unrealistic expectation from many, including the person in a grocery store passing the child with ASD screaming and kicking in a cart while his mother tries desperately to ignore the obvious display of contempt. Many remain unaware that screaming and other socially unacceptable behavior that is witnessed in such a situation is not willful misbehavior. In fact, the child is likely in distress or pain and simply does not know how to communicate or respond appropriately to his overewhelming and confusing world.
ASD is a complex neurological disorder now present in 1 in every 100 children and 1 in every 70 boys in the United States. These children may have keen interests and skills in certain areas but also have significant difficulty communicating and understanding the social rules of our world. In addition, sights, sounds, and touch can be so overwhelming that they have to scream, literally or otherwise, to get our attention and to get the very basic of needs met.
Have you heard the screams, literal or otherwise, loud or quiet? They cannot be ignored when in such great numbers. Are their screams to know or be known, to understand or be understood, to challenge or be challenged, or any or all of the above? The Alabama Interagency Autism Coordinating Council, created by Act#2009-295 the Riley Ward Alabama Autism Support Act of 2009, is working to meet the urgent need for a statewide comprehensive system of care for individuals with ASD and their families. This Council is a collaborative effort of parents, professionals, elected officials and those who are on the autism spectrum. As we work toward a system of care these children are, in fact, our teachers, teaching us patience, compassion, sensitivity, and unconditional love-the most vital lessons of the human condition.
Please visit http://www.autism.alabama.gov/ to learn of the work in progress and how you can participate in this very worthy effort.
By Caroline Gomez, Ph.D, State Autism Coordinator and State Senator Cam Ward
This editorial appeared in the Huntsville Times, Birmingham News, Montgomery Advertiser, Mobile Press Register, and Tuscaloosa News during Autism Awareness Month. We hope it gave outsiders pause and a new lens with which to view autism.
Close your eyes and imagine for a moment that as a child you are woken in the morning after sleeping for only a few hours. Exhaustion. You get out of bed, but have no idea where you are going that day. Anxiety. Someone helps you get dressed, but the tag in the back of your shirt feels like a pin pricking your skin over and over. Discomfort. You sit at the table for breakfast, but can't eat because your feet don't touch the ground and you begin to feel dizzy. Confusion. You ride in the car without knowing where you are going. Distress. You sit in the grocery cart as told, but the fluorescent lights overhead cause your head to begin throbbing. Pain. Now imagine that all of this takes place and you have no way to tell anyone that your are experiencing exhaustion, anxiety, discomfort , confusion, distress, and now intense pain and this was only the first hour of your day. How would you "communicate" your desperate need to get out of that grocery store before your head explodes? It sounds like a nightmare for many of us but it is a living reality for many children.
Children with autism spectrum disorder (ASD) are often living with these and other all-consuming challenges as they simply navigate through the chaos of an hour or a day. They often can't communicate their desperate needs and this creates an unrealistic expectation from many, including the person in a grocery store passing the child with ASD screaming and kicking in a cart while his mother tries desperately to ignore the obvious display of contempt. Many remain unaware that screaming and other socially unacceptable behavior that is witnessed in such a situation is not willful misbehavior. In fact, the child is likely in distress or pain and simply does not know how to communicate or respond appropriately to his overewhelming and confusing world.
ASD is a complex neurological disorder now present in 1 in every 100 children and 1 in every 70 boys in the United States. These children may have keen interests and skills in certain areas but also have significant difficulty communicating and understanding the social rules of our world. In addition, sights, sounds, and touch can be so overwhelming that they have to scream, literally or otherwise, to get our attention and to get the very basic of needs met.
Have you heard the screams, literal or otherwise, loud or quiet? They cannot be ignored when in such great numbers. Are their screams to know or be known, to understand or be understood, to challenge or be challenged, or any or all of the above? The Alabama Interagency Autism Coordinating Council, created by Act#2009-295 the Riley Ward Alabama Autism Support Act of 2009, is working to meet the urgent need for a statewide comprehensive system of care for individuals with ASD and their families. This Council is a collaborative effort of parents, professionals, elected officials and those who are on the autism spectrum. As we work toward a system of care these children are, in fact, our teachers, teaching us patience, compassion, sensitivity, and unconditional love-the most vital lessons of the human condition.
Please visit http://www.autism.alabama.gov/ to learn of the work in progress and how you can participate in this very worthy effort.
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